Inoperable decision -

Hi IanT

Very similar experience to you - had all tests / laparoscopy / met surgical team to discuss surgery two days later had to have a US as some activity which had showed up by thyroid on pet. As thought might be connected plan changed to nivolumab + capox. Am also dmmr.

After initial shock at change of plan after getting my mind round the major surgery option I actually felt positive about the change.

Reading about this option for my genetic markers (same as you I think) there are some really positive things about this treatment I don’t think it rules out completely surgery at all later date. Unless you have mets it seems to be currently only given after a recurrence after surgery so to my mind it’s good to have it prior and am keeping a pma that it’ll work wonders.

There are also advances all the time so try and take one day at a time.

The waiting to start treatment is a very difficult time but becomes easier when you start.

I’m in the middle of second cycle (6x 21 days… then just immunotherapy ongoing). So far so good no major issues bit of tingling on cold and tummy upsets. I can eat normally but try and eat smaller amounts more often and things to keep up calories learning as I go what foods to avoid to manage any issues.

You certainly aren’t alone and there are loads of really kind people on the forum offering advice and positivity.

I hope your wait to start isn’t too long.

I’m so very sorry the news wasn’t as you had expected. I can’t speak from any experience but there will be others here who have been on a similar pathway who can. As has been said …… surgery has frequently been put back in the frame. You are perfectly entitled to request a second opinion and the team should support and understand that. 
Sending every good wish for a speedy start to treatment.

G

Hi IanT,

I was originally diagnosed back in March 2024 at 28 years old (T2 N0 M0). I went through full FLOT, then robotic Ivor-Lewis surgery (ended up T3 N0 M0), then more FLOT. Recovered well over the year, but then recurrence showed up in the lungs and liver (multiple small nodules).

The plan switched to Capox + Pembrolizumab(Similar to FolFox + nivolumab). Originally 6 rounds, but I had a really good response so they offered another 2, taking me to 8 total. I’m now on round 7 of 8, all at 100% dose so far (How important this is I don’t know), and I’m actually heading to Egypt tomorrow for a holiday.

There really is plenty of life left to live. Chemo and immunotherapy hit everyone differently, but there is people having meaningful responses.

A weird thing from my experience just knowing treatment is coming actually calmed the racing thoughts a lot. It’s a completely shit ride, but keep fighting.

There are multiple people across forums that have had the chance at surgery after initially being inoperable. Keep the hope high it really does help keep you going.

All the best,

Rich.

Thanks Rich, its good to hear stories of people responding well to treatment, I just hope I'm in the same situation as it just seems to be going from bad to worse. 

I hope I can get away on holidays and spend some more time with my family as this was not part of any plan and has completely turned our world upside down.  

All the best, Ian. 

Hi there, sorry to know you have had these stressful meetings, my hubby is part way along the route of results and tests you've just described but we are at the PET scan stage coming Tuesday. He has irritated lymph at this stage so we just don't know. 

Hubby has had inoperable possibilities thrown at him due to him having varices which is not related really to cancer at all.though as you said there are other opinions out there second opinions 

Yes l can relate to feeling lost and my hubby, its nearly 6 am and I'm awake again. 

l feel lost too, but I'm thinking, please don't feel lost Ian, you are a loved special person in your family and that hasn't changed. There are new ideas too of the wait and see approach where therapy definitely clears all the cancer but then the surgery doesnt happen 

I read when they remove some areas after therapy thre is no longer cancer present. I also have a friend who was inoperable that was 10 years ago after therapy only and she's ok.

Also rereading your message could it be it will become operable after therapy that shrinks stuff?

We had mixed confusing messages from the nurse and even the wrong cancer results from a junior doc. After we complained to patient support they explained everything properly. 

You can get refered to a bigger hospital team with more surgical experience my auntie went to Liverpool for her eye cancer as the expert was there.

Cancer can go into remission too.

I don't know what  awaits us next week. Hubby in hospital as he cant eat or drink the growth has closed his throat. But it turned out it was inflammation doing it not because the cancer had gone into overdrive.

Sometimes medical folk don't know what will happen, they go by norms, but the human body can be unique and also there are new treatments on the way all the time. Dont loose hope Ian, there much more to come in this process, things could shrink, lve read that on here and then they operate I've read. I'm no expert but hold on there could be more developments.

Also we had confusing mixed messages. It may be worth clarifying stuff like what if it shrinks etc ?

I'm hoping I will respond to treatment, as you say everyone is different and no one can really say for sure what the outcome will be until treatment starts.

I've accessed all my patient files, scans, note etc as I'm seeking a second opinion from the Royal Marsden.  They need the information in order to do so and the NHS have been incredibly quick in helping me obtain all this.

It would appear the initial CT was misdiagnosed by the radiographer who missed the distant node spread and identified a local node spread.  The MDT team identified the distant spread on the CT.  This was backed up by the PET scan as the nodes glowed the same as the primary tumor.  However, the local node was actually not cancerous but just enlarged. 

So in the space of 7 days I had 3 gradings.... T3, N1, M0 (Stage 3) then T3, N1, M1 (Stage 4) then finally they decided on T3, N0, M1 (Stage 4).

With this staging surgery is not an option.

I've been told the likely treatment is Folfox chemo and Immunotherapy (Nivolumab) as I have negative HER2 but a good PD-L1 CPS of 35.

Its been a hard rollercoaster but I'm hoping if I respond well to treatment I still may be offered surgery, but the probability statistically is very low.

It's wait and see time, if I respond then who knows, if I don't, it's a different and untimely ending.

Trying to stay positive, I will have the views of lots of specialists reviewing my situation and hopefully I will have some better luck than I've had so far and will be a good responder, but it's just a matter of waiting to see how I respond and what other trails or treatment may benefit me in this situation.

My swallowing is getting worse by the day as is the pain but the dedicated nurse specialist is brilliant and responsive to my emails and gets medications sorted quickly so just working through this day by day.

Next week I will meet the oncologist and get some clear answers and a plan, I just hope chemo and Immunotherapy starts quickly and I'm not waiting as it's been 2 months since I saw the consultant and time is feeling very precious..

Ian,

Thanks for sharing all that detail. There is much hopeful news too in all of that.

Please don't worry if your throat keeps closing, its ok, they can help. This happened to my hubby, they said it doesnt mean the cancer is on the move at all, its irritated and inflammation building up. 

Hubby kept going onto feeding drinks but don't go too far if you start coughing and cant swallow much as we almost took it to far and they don't want you to breath in fragments of food. Though again antibiotics can sort if you did.

My hubby is on a vein feeding drip until the PET scan.

But again don't be afraid with the throat thing you'll be ok if they have to deal with it closing a bit with inflammation.

Your not alone Ian, it can feel so isolating even with lots of people around. But there's plenty of good hope there Ian, plenty of scope and avenues that can come up with good news, hang on to that, there's a journey for us all. I'm not good at patience, but we .just steady ourselves as we wait. My dad used to say good times are just around the corner. There are lots of good looking corners to go around as you've described, hang on in there. Good to speak you sending my best to you and your family  xxxxx